The Latest News on Multiple Sclerosis and CCSVI Research

In a joint statement just released, the National MS Society and the MS Society of Canada gave a six month progress report on the seven society-funded, multi-disciplinary teams investigating chronic cerebrospinal venous insufficiency (CCSVI) and its possible links to multiple sclerosis.

In unprecedented fast-tracking last spring, the U.S. and Canadian MS societies gave more than $2.4 million (USD) to the seven “shovel-ready” projects proposed by teams of experts in the fields of radiology, ultrasound, vascular surgery, and neurology. These studies were chosen from scores of applicants by an international team of experts in relevant fields as having the greatest potential to quickly and comprehensively determine the significance of CCSVI for multiple sclerosis.

While uncounted numbers of people living with multiple sclerosis in both the United States and Canada have traveled to other countries for vascular procedures (so-called “liberation” treatment, but essentially, angioplasty procedures to clear blockages in neck veins) in the past 18 months without waiting for results of such studies, Dr Paolo Zamboni – the doctor who first proposed the theory that CCSVI is a possible cause of MS – has time and again urged patients to seek treatment only as part of a research protocol.

This blogger sat in on an informational meeting about CCSVI in Seattle last week attended by more than 150 people, dozens of whom have received varying degrees of venoplasty to open suspect blood vessels.

Presenters from three different vascular intervention clinics around the western United States were on hand to present their practices as ready to or already providing CCSVI treatment for people with MS. Two of the three clinics had hotel suites across the street from the meeting place and were offering $700 Doppler ultrasounds throughout the weekend to diagnose blood flow abnormalities and schedule (at patients’ discretion) liberation treatment for an additional $5,000 to $7,000 U.S.

The scientific community is far behind the curve of a vocal and energized segment of the MS population on the topic of CCSVI. Even though the MS societies sped through the initial phases of the grant process, the two-year research process is not fast enough for the hundreds (if not thousands) of patients expected to seek treatment in U.S. facilities in the interim.

The charge to researchers is to first establish the rates of CCSVI in MS patients relative to a healthy control population and to people with other neurological diseases and health conditions. They also want to know whether CCSVI is involved in:

1. varying levels of MS progression

2. both early and late MS progression relative to diagnosis

3. different types of MS, including progressive forms of the disease

4. Clinically isolated syndrome (CIS), which is, according to NMSS, “a first neurologic episode that lasts at least 24 hours, and is caused by inflammation/demyelination in one or more sites in the central nervous system.” People who experience a CIS episode may or may not go on to develop MS.

Though initial reports from Dr. Zamboni stated that 100 percent of MS patients exhibited CCSVI symptoms compared to none of the people who did not have MS in his studies, each of the imaging experts at last week’s meeting stated that they have seen thousands of cases of what is now being called CCSVI in patients they were scanning for other circulatory problems. The panel could not comment as to whether these patients had or later developed multiple sclerosis.

As of today, all but one of the research teams have received the required regulatory approval (from either their Institutional Review Boards in the United States or the Research Ethics Board in Canada) – a mandatory first step to ensure the safety of human subjects involved in such research studies.

The rest of the teams are now recruiting and, in the case of more than 200 people, begun a multitude of scanning procedures including Zamboni-protocol Doppler ultrasound, MRI, MR venography, and catheter venography.

The two funding agencies have endeavored to report progress (as much progress as rigorously blinded and controlled studies can report while trials are ongoing) twice as often – every six months – as is considered standard in such matters. The goal is to scan more than 1,300 people for the collective research.

You can learn more about the studies and read details of each team’s plan:

Carlos Torres, MD, The Ottawa Hospital: Using MRI and Doppler ultrasound to explore vein anatomy and look for iron deposits in the brains of 50 people who have MS and 50 age-matched healthy volunteers

Katherine Knox, MD, Saskatoon MS Clinic, University of Saskatchewan: Looking at the revalence of CCSVI in 200 people including those with MS and controls without MS. This study’s control groups will include family members, such as identical twins of MS patients who have not developed MS

Robert J. Fox, M.D., Cleveland Clinic Foundation: Seeking to reproduce earlier CCSVI test results in 90 people with MS and 80 control subjects without MS, as well as examining vein tissues obtained via autopsy.

Houston, Texas: Testing imaging methods in an attempt to validate a diagnostic approach to CCSVI

We will, of course, keep a close eye on the researchers’ progress and report back on these and other CCSVI research studies as news breaks.

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ABOUT THE AUTHOR

Trevis Gleason

Trevis L. Gleason is a food journalist and published author, an award-winning chef and culinary instructor who has taught at institutions such as Cornell University, New England Culinary Institute and...read more